Hi Fibro Family, I hope you are all coping these days.
I have a few health conditions problems with my neck (spondylitis) knee damage (Chondromalacia ) and pain mainly in my lower back which makes me have to sit down after a few minutes, I feel it is like spasms. I am unable to get out now unless the family come by car as my walking has got so bad now, but I try to cope with the house chores as best I can and be as mobile as I can , though it is difficult and have to take myself to bed often especially if I am on my legs too long as the knees and back complain.
I have been taking terrible sweats recently, especially when trying to do things (I turned 70 this year) and another symptom I have started getting is the feeling that I need to pass urine all the time and I am visiting the loo often during the night though it can be a waste of time, and was wondering if this is related to Fibro as it is only a recent thing??? I take restless arms and legs quite often in bed which can be hard to cope with and I am now getting what feels like small needles getting put into the soles of my feet.
I take Tramadol Paracetamol and was advised by the GP if I have to go out anywhere to take a Brufen 400mg along with the rest 2 hours before I go anywhere to see if that would make me feel a bit more comfortable as I hate missing family/friends celebrations. I dont like being on medication so have started taking some natural products also in the hope of getting some ease. I would so love a long walk in the wind and rain and feel part of the world, but that is out of the question these days walking anywhere, though I realise I shouldn't complain as so so many of you are suffering much worse than I am and I need to try and get on with it!!! Fibro and so many other of the conditions that seem to go along with it are no joy!
I would be grateful for any of your replies. God Bless you all! Xx
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Hi there, If this is a recent bladder problem for you I would strongly have a word with your GP, nurse or pharmacist to rule out any kind of water or bladder infection xx
Thank you Dizzytwo. I have a feeling we have been in contact with each other over the years possibly, as recognised your name! For some reason I don't feel it is an infection as it is something I have never had problems with throughout my life but things can change as you get older. I do have problems with my lower back and just wondered if it was that affecting the nerves in the spine area or the fibro as just feel the bladder is being a bit over active. I will contact the surgery if it still persists. I hope life is treating you kindly? God Bless x
Good morning, I agree it may not be any of the problems that's been suggested. But to be honest no one knows. It may be nothing and be as you said. But it's worth getting it checked out. If it's only to give you peace of mind.
I am sure we have had contact over the years. I feel like part of furniture. Getting a bit old and rusty now 🧑🦳 lol Have a good day.
It is not often I am on our Fibro website now but at one time I knew quite a few of the names who kindly would give me advice and I remembered you. Don't see so many familiar ones now but it is great just having people there if you are concerned about things especially when I was going through grief and the fibro had so escalated. Our fibro family so many had been through similar and it was a huge help to hear from others and get advice. Keep well Dizzy two hugs x
hi 1499 reading your msg felt like it was me as everything you have said is everything I suffer with so I know exactly how you feel, I had assessment last week for cervical and lower back pain and the urine issue was also discussed. The specialist said if any urine issues like numbness occur where you don’t feel the urine passing then go to a&e straight away as it could be something called cauda equina, it’s where pressure is put on nerves that give you numbness down below so if that happens it’s an emergency. Hope it gets sorted
Thank you for your reply. I dont have numbness or pain or anything. I was on a fibro website today and it did say that Fibro can definately contribute to an overactive type bladder. I will need to cut down maybe on caffene drinks and not drinking too near bedtime to see if that helps. I know getting older doesn't help either. Keep well x
hi, I wouldn’t say it’s fm related, as such, but bladder complaints, does go along side it, a lot of us have it on Hu, there can be many causes, icts intististial cystitis, bladder cramps, infections, spicy foods.
I would suggest you speak to your doctor, and have a test, just in case, of infection .
No wise words except to say I know what it feels like as I have the same, spine problems which affect me when I stand up Fibromyalgia and the restless legs drive me insane.. I am 75 and have accepted this bladder problem I now buy the Tena lady pads which are very good and it helps me feel a bit more confident hope you can get on top of it as it is so hard xxx
Thank you so much Pat for replying and advice so sorry to hear your experiencing similar problems to myself but we soldier on as best we can. God Bless x
Oh my goodness, all your symptoms sound like it could be B12 deficiency. It is a lot more common than people realise and is often mistaken for fibromyalgia as it causes a myriad of symptoms, including back pain (due to nerve damage), bowel and bladder problems, pins and needles in arms and legs, and many more. Have a look at The Pernicious Anaemia website, it is so enlightening. Apparently the B12 tests GPs do are flawed and often they tell you it’s within range and normal but it’s actually low. It’s worth looking into and has been an eye opener for me and I have suffered fibromyalgia for 19 years. I am having an iron infusion shortly plus starting B12 injections, so hoping it helps. Hope you find an answer.
There is too much information to go through, and I am not a medical professional, just someone who has done a lot of research, but if you join The Pernicious Anaemia Society community on here, there are lots of knowledgeable people who can give you much more advice than me. Also the website. I have been through many tests, consultants and different diagnosis over the years, it’s hard finding something that links of these symptoms together, and fibromyalgia is the name given to this collection of symptoms, but I do wonder whether it is all down to B12 deficiency.
Thank you very much for replying. I believe l am low on vit B. I have been suffering from fibromyalgia for 15 yrs now and my Cymbalta tablets no longer work. 😢 unfortunately l live in Italy and there is no help whatsoever and my doctor is useless. God bless you 🙏
I’m in the UK and doctors are useless too when it comes to B12 deficiency, one has to either go private or find a specialist who deals with B12 deficiency. Not sure how things work in Italy, so I’m afraid I’m not much help on that front.
That is sad you get little help!!! It is a weird condition and it never goes away unfortunately and the GP's seem to be at a loss to be able to help much.
Amitriptyline helped me many years ago when I started taking like electric shock pains in my legs. Apparently it is the first drug they try you on now. It then stopped working as the fibro got worse over the years and I was put onto Pregabalin it helped on the low dosage for a while but when they upped the strength I started swelling in my hands and feet and just felt awful. They do work well for some patients.
I take tramadol and paracetamol but I have other health issues which give me pain especially knee and back problems. It is hard to get through each day and if you try to overdo anything you end up in bed for days with a huge flare up. There is a book by a Dr Jacob Teitelbaum which I read it years ago which may be of interest. He was a student Dr in America who developed Fibro. He lectures I believe on fibro now in the USA. He brought out a powder shake which he felt would have all the vitamins and essentials in it to help fibro but I notice it is hard to get now. It was called "Fatigue to Fantastic" as is the name of his book. It is trial and error for all us Fibro warriors what helps one doesn't suit another. The exhaustion at times I feel can be worse than the pain dragging your body about.
I had acupuncture years ago which really helped and I use a Tens machine at times and hot water bottles when the pains get bad and have a back massager. It is a case of trying different things. The advice I got from the Pain clinic Consultant many years ago was pace pace and pace yourself. Easier said than done I know! I took CBD oil years ago which didn't help but I am now trying CBD paste at quite a high strength to see if it will help. Nothing can be done for my knees, no operation is available apparently so I rarely get out now and I loved to go for a walk but my lower back gets so painful trying to walk also. There is a lot of wear and tear issues with myself and many Fibro warriors have other conditions to cope with also. I try to keep as mobile as I can. Hopefully you will find something that will make life a bit more bearable for you, I find 2 x tramadol plus 2 paracetamols take the edge of the pains so go back and speak to your Dr or see another GP. Wishing you the best of luck Xx
Thank you for writing to me. Unfortunately l have tried everything and no pain killers help. I have started Flexiban which is helping me. I take before l go to bed. I also take Cymbalta 60mg and 30mg but after 15yrs they no longer work. ( dr won't take me off of them) l have bad dry eyes mouth and nose and down below due to taking them. 😑 👋😘
Hi again! I believe cymbalta is a strong pain killer. Fibromyalgia affects the nerves in the body so I was told and that is why the pains can be so severe. I couldn't cope with pregabalin after the Dr increased the strength due to side effects so came off it but I do know others who find it helps and with the other drug Gabapentin which I have never had they are supposed to more with nerve pain I believe. All these meds are so potent I feel and I feel all have some sort of side effects. I haven't heard of flexiban but I googled it and it seems to work on the nervous system so is possible a similar drug to pregabalin etc.
I wish to God they would start prescribing oral cannabis for people in severe pain and as I said to a Pain Consultant years ago it should be used as the first drug to try as it seems to have no or very little side effects especially with cancers patients having to undergo the horrible effects of chemo which can cause cancers. I found this out years ago and when my husband who sadly had two forms of cancers I did ask one of his Consultants was this true and he said yes it can! When you are dealing with cancer you live in hope though that some form of chemo will help or trial drugs, but many Drs wont take chemo themselves. I used to say to my husband, and got him to stop the trial drug because he became so ill, that the drugs were worse than the disease I felt and there was no quality of life. Within a week of stopping the drug he had more energy and was more himself though the drug caused a large lung clot.
Maybe you should try acupuncture or something if you haven't already. God Bless take care Xx
Thank you I will definately have a look on the pernicious anaemia site my Dad used to get injections for that. My last blood test must have been ok as the practice nurse never contacted me but as you say maybe some of the GP tests aren't spot on. I had read an article a while ago that patients were told their thyroid blood tests were fine but they still had symptoms and when some investigated further, not sure if they went private or not? but it was found that there thyroid was at fault. I hope the injections help and your iron infusion. Good luck x
hi 1499 i fully understand what you are going through. i to have bladder problems which i have been treated for lnfection but they keep returning. so i think it must be fibro related. i am 72 living alone and housbound. like you i have many more health problems including severe constant pain mobility problems and now fibro fog! i have spent a fortune on various private treatments but nothing helps with this dreadful disease. i find that doctors realy dont know enough about it to treat it. you are so lucky to have family dropping by i have nobody since my husband died 6 years ago. i have a couple of friends who i am i in touch with but they have moved away. i dont know how i have survived but i have 2 loverly cats who keep me going. they are such a com fort. lots of love from lady julia.
Thank you Ladyjulia for replying. I am so sorry to hear you live alone also after losing your husband. It is 8 years since my husband passed. I am thankful I have family and very good friends to call on though I try and be as independent as possible.
I was very involved in my parish for many many years , played guitar and sung in the folk group and I so miss it. I keep getting asked to come back and sing though my neck and back get so painful if I play too long, Even the sitting and standing with this knee condition can be painful. I can see the church from my house , but even the short walk there now is so painful. I get offers of lifts constantly but I really hate bothering my family or friends , but our lovely Fr.John calls in with communion every couple of weeks and I can watch the mass and services online but it isn't the same. I was so involved for most of my life with my family and friends and don't really feel part of the parish now.
I have a lovely friend who is going through cancer for a second time. She is in her late 60's and had a double mastectomy and hysterectomy in her late 30's. The breast cancer gene they discovered was in her family. Her lovely husband was at school with me and around the same time after 8 years of having problems with his legs he was finally diagnosed with M.S. My friend broke her collar bone last year. I think the chemo even from years ago thins the bones and when she had an xray and a scan for the collar bone she was advised that she had developed lung cancer. I couldn't believe after all these years she had cancer again.
Her husband who latterly could do nothing for himself passed away last year. It is true as my husband used to say "there is always someone worse off than yourself". Everytime I feel as if I can't take much more of the pains and mobility issues I always think that my lovely wee friend would gladly swap places with me and it makes me count my blessings!!! I realise it must be so difficult for you and wish you had friends nearby.
I am able still to keep up with doing wee bits at home. I used to be a fussy housewife but if I try and do too much it can be 2/3 days in bed. I mentioned to the Pain Clinic Consultant (I don't attend now as felt they could do nothing for me though the Dr was such a nice man} that at times I felt I had fibro fog maybe trying to remember someones name and other things but he told me it was probably my pain meds Tramadol that were causing this. Medication can have so many side effects and though they help they do make you very tired, so it could be related to your meds also.
There is a way you can send private messages Julia to people on the Forum. I used to keep in touch with a few nice Fibro friends over the years. I am not very good with technology and have forgotten how to do it (or if you still can but I am sure it would be easy enough to find out} but if you want to keep in touch with me feel free as I would be more than happy to keep in touch with you. I could also give you my email address and I am on facebook. I always said I would never do Facebook but after my husband passed my daughter in law thought it would pass some time and let me keep in touch with family and friends also, so she set it up for me.
I lost our rescue dog of 12years old a year after my husband passed, and had moved house also, so it was a big upheaval but the family wanted me nearer them and my friends. That really caused the knees to get much worse the packing up the last house and lifting etc. My sons were great but were working through the week and I was trying to do as much as I could myself before they came at weekends.
Over the years we had 3 rescue cats and two rescue dogs not all at the one time but after Rocky passed which was hard to cope with (I had to get a dog walker for him over the last few years) I said I would have no more pets! I was unable to walk a dog anyway for years and felt with getting older I wouldn't even take on a cat, however, my daughter in law kept sending me pictures of cats looking for homes. I kept saying no but eventually the seed was sown and like yourself I now have two lovely calico girls aged 4 and 2. They do make me get up and get on with it lol! They are great company and please God we will have a lot more years together!
I am so sorry you are going through so much along with the "Invisible Enemy"* known as Fibromyalgia. I have started on CBD oil again it didn't help before but anything is worth a try.
Thanks for your lovely message.i am not good with technology.its passed me by ! I would like to keep in touch with you but I don't know how to send you a private message. It seems you have a lot of support around you. Am glad you have cats! They keep me going. Sending you hugs love pam ❤️
Hi Ladyjulia I have tried to send you a wee message as a private chat. I am not sure if you need to go into the chat sign on the top right hand side of the page to receive it or if it will show you on your device that you have a message from me. No probs if it hasn't reached you keep well. hugs Caroline x
Hi. Sorry to hear about your problem. Have you had your prostate checked. Probably have but springs to mind. My problem was that I have a tight prostate that gives me the same problem.Just a thought. Hope you get it sorted 🙏
Hi, I have fibro and interstitial cystitis (I'm told they are linked). It's not easy to get a definitive diagnosis. I went private and had a cystscopy. I had 6 bladder rinses which helped calm the inflammation and avoided eating any of the triggers for quite a few months and I now avoid my worse triggers which are caffeine or drinking anything other than water and milk in my porridge. Mostly I do ok now, the occasional flare but so much more manageable than it was. I hope you find some relief somewhere. It's awful living with any bladder issues on top of fibro x ps an interesting point on the B12 comment above which I may investigate myself 👍
Hi I'm concerned if you are taking brufen they are very dangerous I thought they had been banned, my father died as a result of taking them.. take care 🙂
I was prescribed Brufen last year and I hate taking them as they can go for your stomach at times and I try and only take one in a day if I have to or before going out. They are the same as Nurofen which you buy over the counter I believe though I am not sure the amount of Ibuprofen that is in Nurofen it could be less. I know they aren't good for you I don't think any anti-inflammatories are but yes they are still being prescribed and nurofen is still being sold and you can get child liquid nurofen. I was an Enrolled Nurse way back in the 70s then worked in a GP practice and they were widely used then. My Mum was also a GP Receptionist and she always felt it wasn't wise to be on them as she had a friend who took them for years having Rheumatoid Arthritis.
.They do thin the stomach lining and can cause stomach bleeds. I do try not to take them and I am taking CBD paste in the hope that will help me. The CBD oil didn't do much for me over the years and I am always looking for something more natural. I had been on Pregabalin a few years ago as had been on nothing for the fibro at that time only cocodamol but I was looking after my husband who took renal cancer and Leukaemia and I think Fibro reacts to your emotions at times and my fibro escalated and the GP gave me pregabalin. It was like Manna from heaven, as after a few days I could not believe for the first time in a long time I had no stabbing burning pains anywhere.
I was started on the lowest dosage but after a while the fibro got worse and the strength was increased and I was feeling horrible and my hands and feet started to swell so I knew I would need to come off them. It seems nowadays it is either pregabalin or gabapentin I think is the other one that is prescribed. All I was taking was tramadol and paracetamol which I feel is more than enough. I am rarely out due to the pains when walking and I told the GP it is hard even to get out with my family or friends who all pick me up in their cars and with the effort of getting ready to go anywhere also it is painful and uncomfortable . All the GP could advise was to take one Brufen along with my meds before I have to go out or when my knees and back feel really bad.
I agree with you they aren't good for you and that is so sad about your Dad! I do try some of the anti inflammatory gels at times but I would much rather take natural products if possible. I ended up in 2017 with Jaundice and high liver function levels in hospital with terrible stomach pains apparently my liver was very swollen. Hospital weren't sure what had caused this but with the grief with losing my husband and the fibro being so bad they felt my system was very low though thankfully my liver ultrasound showed it was all fine so they put it down to taking cocodamols for years. My Mum used to say they were all poisons all medications, but I know they are a necessary evil and we need them if we are in a lot of pain. I am very careful with the Brufen. I appreciate you replying many thanks keep well x
Hi nice to hear back from you do you take Omeprazole to line your stomach and did the doctor give you the brufen or are we talking about something you can buy over the counter. I take tramadol and paracetamol I also take Duloxetine which I get on well with but I don't get that much I can't walk I haven't been able to walk for years I've just brought an electric wheelchair now, between the fibro and the ME just knocked me off my feet take care 🙂
Hi Fibo, Yes it was the GP who gave me the Brufen and I know a lot of people who take it get omeprazole to help the stomach but she didn't suggest or prescribe this and I did say to her if I am on Brufen i.e. for a few days it starts to affect my stomach I just get a yucky feeling. I am so sorry your mobility has got so bad!
If I have to go anywhere with my family in the car I have to use my walking stick to walk to their house or into a shop. I said to a friend recently that I felt the only way I was going to be able to get even to the wee local shop now would be to get one of those wee scooters. Pride is a terrible thing with me, I hated even using a walking stick but I know my mobility is getting worse and pride at the moment would hold me back from seeing about a scooter, yet so many have them.
I believe Duloxetine are quite strong but are a good painkiller and great you get on so well with them . It was a phone call appt I got with the GP last year as I haven't seen a GP since 2019. The last one I saw just said he could do nothing for me as I was under the Pain Clinic. To be honest the Pain Clinic have done nothing for me and eventually never returned any phone calls I made when pains escalated or even to my letters. I am not the type of person either to bother the GP or the Pain Clinic unless things get unbearable. The pain clinic never prescribed anything for me or suggested any or therapies so I don't go now and have never been lettered to attend for years. The Consultant was so nice but didn't like his patients really being on meds even cbd oil, but last time I saw him he was all for it hoping one day they would be able to prescribe it.
Thank God for my good friend who is a retired nursing sister. She calls in from time to time but with getting no reply from the pain clinic or help and without sleep for days ( a few years ago } she just happened to appear. She knew I was struggling and I was exhausted and had been teary. She asked what meds I was on and I said Tramadol that was all. She said take paracetamol. I told her I would be better eating sweeties lol! She said not instead of tramadol but with tramadol and told me a lot of her patients did that. I really was taken aback as the pain clinic had never even told me I could do this or suggested it. Thank God that night was the first time in days I had managed to get over to sleep.
I have really bad pain in my knees and damage, pain in lower back and spondylitis, but as you know with fibro you can have pain anywhere arms chest thighs shoulders. You name it! This young GP I spoke to about not being able to get out now as can be sitting in pain suggested I take a Brufen along with my meds 2 hrs before going out. I told her I felt if my knees were ok I felt my walking would be so much better but she seemed to think that the fibro was causing so many of my problems. I presumed the knee damage and Chondromalacia as they call it was the cause for my walking being so bad but I did tell her my thigh muscles and my hips now as well as my lower back all seem to be involved now. I did ask many years ago at the pain clinic if my neck and spine could be xrayed but it seemed to fall on deaf ears. I just wanted to know is it damage with Arthritis wear and tear or was the fibro involved. Has the fibro affected you knees thighs and hips as I would be interested to know. Apparently no op can be done for chondromalacia the stairs are becoming so difficult to manage with the pain and stiffness.
I do hope you enjoy getting about in your wheelchair well done you I am sure it will make a huge difference to your life. Take care hugs x
It could be a prolapse, it does get you to want to wee more often. Or what I have: interstitial bladder (walls of the bladder damaged) and white wine is to be avoided in my case or too many acidic food.
Thanks for replying I am sorry you have problems also. I believe Interstitial Bladder is painful so I don't have any pain and I have a feeling I don't have a prolapse. It is no joy getting older and I think the menopause and beyond along with Fibromyalgia and the other conditions we have seem to affect everything. I usually take water to bed with me as I wake in pain at times and have to take more meds and I do tend to sip more if awake so will need to cut that down and give up tea and coffee or cut down and see if that helps.
My family are always telling me I don't drink enough and I probably don't during the day but they say with me being on meds I'm not drinking enough!!! I'm not grossly overweight but with my knee and other conditions and not as mobile I have put on about 5 pounds and if could lose that it would get me back to my normal weight and maybe help more. I do try to keep mobile as much as possible but it gets when I try to do anything a wee bit more strenuous I can hardly move with pains or go upstairs to bed. It is hard for us all, as I know I am not alone as many of our fibro warriors used to be so so active till we developed the "Invisble Enemy" I hope you are not in too much pain!!! hugs x
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